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#163704 04-06-2013 10:57 PM
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Jaysea Offline OP
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My husband had part of a tonsil and part of the base of his tongue removed yesterday and we were told that it looked like stage 4squamous cell cancer. These were sent to be analyzed,and the waiting is miserable. The shock hasn't worn off yet. I guess I'm just looking for support now because I'm feeling very alone right now.


Jana, wife and caregiver to husband, Byron, age 45, dx 4/5/13 SCC, Stg 4 BOT, non-smoker.
Jaysea #163707 04-07-2013 03:19 AM
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Jaysea - You have come to the right place for support and accurate information. I'm sure others will be along whose experience more closely resembles that of your husband's. The waiting is definitely the worst part and can really be a crazy-maker - so try to keep busy, take some deep breaths and check out the main pages of this forum for information which can help you put together questions for the doctor or for anyone here. My son had SCC (Squamous Cell Cancer) on the underside of his tongue but is doing fine, now 6 years later! Did your husband have a biopsy done before surgery? Or did the doctors outline a plan of treatment for him? Once you know what the treatment plan is, you will feel a lot better and can start doing something about it. As a caregiver, you need to take care of yourself, too. And just know that you are NOT alone. Lots of people are here, ready to help you and your husband get through this stressful time, so stay close and let us know how you are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Jaysea #163708 04-07-2013 03:49 AM
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Welcome! You have come to the right place for Correct medical info and support. Now that you have found OCF, you are not alone! We will help you and be here to lean on.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Jaysea #163902 04-10-2013 12:26 PM
Joined: Dec 2010
Posts: 5,260
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HI... welcome and ditto what everyone else has said. It's horrifying and scary, but you will get through it. Hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Jaysea #163911 04-10-2013 03:07 PM
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Jaysea, here you have a circle of friends who truly understand what you are going through. Being a caregiver is hard work and is emotionally draining. Make sure you keep doing one or two things you like doing as it can take your mind away from worrying for a little while each day. Exercise if you can and feed yourself. You want to stay in good physical form so that you can help your husband deal with his illness.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Jaysea #163921 04-10-2013 06:08 PM
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Hi Jaysea,
I know exactly where you are. All of us caregivers do. It is absolutely terrifying the first few weeks. I promise that once you have started treatment and are IN battle mode, it will get a little better. It's a tough battle, but one we have beat and you can too.
It sounds like your husband's dx is very similar to my husbands. Please know that we are here for you. I didn't find the site until we were near the end of tx, but that was when things were the worst, so it was a huge relief.
You will be completely overwhelmed for a bit, but try to remember to breathe. People told me to make time for me, but that was impossible with 3 kids and my 87 year old Mom here too. I would take a longer shower and let everything out there.
One thing I want to mention, just in case this happens to you guys. Our friends kind of disappeared. I'm not sure if they felt helpless or scared or whatever, but most of them were just gone. But it was amazing how we made new friends and these folks are the real deal.
We're here sister...
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Jaysea #163956 04-11-2013 10:56 AM
Joined: Apr 2013
Posts: 4
Jaysea Offline OP
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Thanks so much to everyone! Doctor follow up was today. No change from the pathology report. Now we're waiting to see an oncologist. Everything is complicated by the fact he had no insurance. We're self employed and he's never been able to get coverage because of type 2 diabetes. Sooooooooo frustrating!


Jana, wife and caregiver to husband, Byron, age 45, dx 4/5/13 SCC, Stg 4 BOT, non-smoker.
Jaysea #163957 04-11-2013 11:13 AM
Joined: Jun 2007
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Ask for any type of programs they offer for uninsured patients. Some places you have to ask to get help. If not make a payment plan to pay so much forever. Much better to be in debt and get the very best medical care out there.


PS... Ive sent you a message a while ago. Check out the blinking envelope next to the "My Stuff" tab and click on it to get the message.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Jaysea #163961 04-11-2013 12:30 PM
Joined: Apr 2013
Posts: 4
Jaysea Offline OP
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Joined: Apr 2013
Posts: 4
Christine,
I read the message you sent, but did not see instructions for a signature. I'll look again.


Jana, wife and caregiver to husband, Byron, age 45, dx 4/5/13 SCC, Stg 4 BOT, non-smoker.
Jaysea #163963 04-11-2013 01:02 PM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Posts: 10,507
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The instructions are included in the link. Please take a few minutes to review the link. It has everything in there to help you learn the forum quickly and easily.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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